three-parent babies

Imagine you’re in your late thirties. You have one child of eighteen months, Mia. Beautiful, much loved, and long awaited. But Mia is suffering from a devastating disease which is damaging her brain and other organs, she can’t eat or sit up or smile, she has frequent seizures. More than that, you know that you, her Mum, carry this disease; you are the one who passed it on to her. She has at most a couple of years to live. Before she even reaches school age you will be attending her funeral. And any future children would be very likely to inherit the same condition and go the same way.

Now imagine a doctor tells you you could have a child who is healthy and free from this terrible disease. Indeed that he could wipe it from your family entirely. For ever.

Now you’re talking! It’s a no-brainer surely. Who in their right mind would say no?

Ahh … well, there are some people – a lot of people actually – who would say to you: ‘No, I don’t want you to be allowed to have this healthy baby. And I’m going to campaign with all my might to stop it being legal for you to do so. I have my healthy normal kids, but you are condemned to heartache and loss because of a quirk in your genetic makeup. And my moral indignation trumps your biological rights.’

Yep, you’ve twigged. We’re talking about mitochondrial diseases. The mitochondria’s the bit outside the nucleus which doesn’t pass on any personal attributes but which helps to produce energy; the so-called power house of the cell. And faults in this area can result in terrible life-limiting diseases. Journalists talk about ‘three-parent babies’, but that’s an emotive and misleading and singularly unhelpful term. Does anyone refer to infants born via artificial insemination by donor in this way? or surrogate pregnancies using donor eggs? and yet they are more three-parent than the mitochondrial variety. Because only a miniscule amount of mitochondrial DNA (less than 0.001%) is from the donor, none of it responsible for the characteristics of the resultant child; almost all of what the infant inherits is in the nucleus, and 100% of that comes from the parental couple themselves.

On Tuesday this week parliament debated whether or not the UK should become the first country to permit mitochondrial donation to eradicate severe debilitating diseases of the mitochondria. Permission was approved. It’s worth noting that the UK has one of the most rigorous regulatory systems in the world when it comes to reproductive medicine and these various stages of consultation and approval are one aspect of that rigour.

Once again, though, up jump the zealots and pontificators and detractors – they’re attracted to developments in the field of fertility like iron filings to a magnet. But this time it’s not just the usual extreme suspects who are objecting, even the Church of England spokesmen on medical ethics are using terms like ‘irresponsible’, ‘an ethical watershed’. Why? Well, at its heart is this factor: the procedure will fundamentally change the genetic makeup of an embryo in such a way that it will alter the inherited characteristics not just of one single individual but of future generations: modification of the germ line. The changes will be passed on; there’s no going back. And who really knows what might result from that? Nobody, that’s who. Nobody can guarantee the long term effects, because we have no data (human at least). None exist. It’s a new procedure (although in reality work has been going on for 15 years behind the scenes in preparation for this moment), but potential increased risks such as premature aging and cancer have been mooted. OK, three scientific reviews have concluded that it is unlikely to be unsafe, but it’s also a fact that scientists do not fully understand the interaction between the nuclear DNA and the mitochondria, which leaves some important questions unanswered.

However, for me this balance of risks and benefits falls into the same category as Lord Saatchi’s Medical Innovation Bill. When the chips are down, when there is nothing but bleakness, tragedy and death ahead, isn’t there a case to be made for well-informed patients/parents to take a calculated risk? We aren’t talking about offering this procedure to the rank and file of childbearing couples after all; only a minority for whom the alternative is too terrible, too heartbreaking, to contemplate. Don’t all scientific discoveries take a leap of faith at some point? Of course the researchers and scientists need to keep working to explore optimal conditions and refine techniques and enhance safety, but that’s true of even the now-common procedures like IVF. If mitochondrial donation is allowed, the children born this way will need to be monitored closely for the rest of their lives, and their children after them. Every step will be scrutinised minutely.

The HFEA Act requires that the embryo be treated with special respect. Quite right too. Few would argue. Misunderstandings are much more to do with the perceptions of what is proposed. So let’s clarify. Scientists are NOT trying to enhance humans in any way, they are not even trying to alter a child’s characteristics. They are aiming to prevent crippling and often fatal diseases and avoid couples now and in the future suffering the incomparable heartache of losing their children in these tragic potentially-avoidable circumstances.

Religious adherents may protest loudly, and indeed in our democratic society, they have a right to their opinions, but what of the Biblical injunctions: Do to others as you would they should do to you, and judge not that you be not judged? Should a Jew or a Muslim or a Roman Catholic or an evangelical Christian or whoever impose their specific viewpoint on Mia’s Mum? On society in general? These are terribly difficult and painful moral and personal issues which affect couples at a very fundamental level. What gives others the right to dictate, I should like to know?

Religious objections aside, a valid sticking point for a lot of people is one of safety and timing. Pre-clinical safety tests have not yet been concluded, and until the results of those investigations are known, it does seem premature to rush through new legislation.

So, we aren’t there yet. Now that the new legislation has passed this week’s hurdle, it comes before the House of Lords on 23 February. If it’s successful then there follows a careful and exact and rigorous process of trials. Caution is the name of the game just as it was with IVF; scientists agonised waiting to see if those babies were healthy. It’s possible the first human trials could begin in October this year, with the first babies born in autumn next year.

The idea that this is some form of malign genetic manipulation is nonsensical, but I did smile at the terse letter to the Telegraph from a man in Aylesbury:

I know my antennae are always tuned to pick up the merest sniff of medical ethics but this week has been a veritable bonanza in the media. Would these headlines grab you too, I wonder? Do the questions trouble you?

The controversial Liverpool Care Pathway, for example. Designed to ease the final hours or even days of a terminally ill person’s life: is it being abused? The son of an elderly woman who died in an Edinburgh hospital thinks so. He has accused her doctors of ‘murdering’ her, and the newspaper headlines certainly make the case sensational. At the moment the circumstances are being investigated by the Scottish Fatalities and Investigation Unit, and if anything suspicious is found, it will trigger a police investigation – the first relating to an individual death to be officially dealt with in this way. How do you feel about the LCPathway?

Then there’s the major news that this country is set to become the first in the world to approve the creation of so-called three-parent babies – a way of allowing couples with major defects in their mitochondria (the bit around the nucleus that contains around 37 of the total 2,000 genes) to have healthy children who don’t die young. What a stooshie that’s causing! And that’s in spite of the fact that it’s the nucleus that carries all the genes for looks and behaviour. And you’re saving babies and parents terrible suffering and distress. Ah yes, BUT it’s genetic modification on human beings, with permanent results for generations to come. And the nucleus and mitochondria don’t operate in isolation; they talk to one another. And the mitochondrial cells control metabolic functions. Who knows what you might be unleashing … and unable to reverse. How say you?

Thousands of miles away there’s another scenario playing out that currently has the media here in a frenzy. 94-year-old Nelson Mandela is on life-support machinery. The world reveres this man. His countrymen are fervently praying for his recovery. He has six children, 17 grandchildren, and 14 great-grandchildren, who are riven by disagreements and conflict at a time of private sorrow. Decisions about allowing life to end are notoriously difficult – in this case they are set against a nations’ wishes, cultural diktats, family feuding, in the full glare of the media’s eyes. Who should decide? What should they decide?

Rock guitarist, Wilko Johnson, (real name John Wilkinson) is dying of cancer but he’s been inspiring millions with his up-beat approach to the life he has left and his sheer humanity. He had no idea apparently until he saw so much emotion at his farewell concert, that people felt a real personal affection for him. He knows cancer intimately – his wife, his mother, and co-founding member of Dr Feelgood all died of it; he has no faith to sustain him; and yet, in many ways he says, he feels more alive than ever, and a special joy in existing, because he knows every day is special. How would you respond?

Speaking of cancer … should companies be allowed to put a copyright on the genes that cause the disease? Myriad Genetics patented the two major breast cancer genes, BRCA1 and BRCA2, even though the search for the genes was a collaborative effort by thousands of scientists, many of whom were publicly funded. The firm also holds European patents on tests for the disease. In practical terms this means that the UK might be at risk of infringing copyright laws (with all the consequent lawsuits and outstanding royalties) with their own tests using publicly available genetic data. When Angelina Jolie revealed her double mastectomy, she drew attention to the cost of genetic testing (in the region of $3,500). What do we in the UK with our free-at-the-point-of-need NHS make of all this? What do you think?

By way of light relief, in between all this heavy-duty thinking, and working on the publication of Over my Dead Body, I’ve been reading Melisa Hill’s Before I Forget. It’s about a girl whose memory is destroyed in an accident. From the blurb it sounded to be close to my interests, so I picked it up in a supermarket. But … oh dear. Not my kind of thing at all. Style of writing, plotting, characters – I wanted to edit everything. And yet she has THE NUMBER ONE BESTSELLER plastered over the cover. She’s published by one of the big firms: Hodder. Ho hum!